hi, i just logged on for the first time today. my dad was just diagnosed and i'm still in a state of disbelief he starts chemo in five days, all we can do is pray, i hope all goes well with your husband.

I have been diagnosed with MCL and have a choice of R-Hyper CVAD or an experimental genesence treatment. R-Hyper CVAD is known but the other is completely unknown. Which chemo is your father using and why. Thank you

cvad is pretty well known and the others completely experimental. What kind of chemotherapy is going to be used and why.

Mantle cell lymphoma is rare. It is usually detected in the later stages. The good news is that it's slow growing. My father-in-law was diagnosed in 11/02. He just received a stem cell transplant last month, he's doing much better than ever prognosed.

My husband was diagnosed in Aug. 2010 and his was found early...not too much deep involvement, but still state IV since it was located in his neck, groin, spleen and bone marrow, but again, not heavy involvement. They offered to watch and wait, but he chose rather to get started with it! He's doing very well now, but I am concerned since his platelets were right at low normal that maybe they are dropping since he just in the last couple of days had a couple incidents of very small cuts that really bled a lot for no bigger than the cuts! At least they are studying this disease more...and I'm occasionally hearing of someone who was diagnosed or someone who knew someone who was diagnosed. So I think it's on the increase. My husband's started with hives that kept getting worse which was not a symptom, but have heard of a few who did start just like that...and since he was done with transplant, his oncologist told him they had seen a few with similar start as he had!! With hives. Anyone else with hives?

My husband was diagnosed in Aug. 2010 and his was found early...not too much deep involvement, but still state IV since it was located in his neck, groin, spleen and bone marrow, but again, not heavy involvement. They offered to watch and wait, but he chose rather to get started with it! He's doing very well now, but I am concerned since his platelets were right at low normal that maybe they are dropping since he just in the last couple of days had a couple incidents of very small cuts that really bled a lot for no bigger than the cuts! At least they are studying this disease more...and I'm occasionally hearing of someone who was diagnosed or someone who knew someone who was diagnosed. So I think it's on the increase. My husband's started with hives that kept getting worse which was not a symptom, but have heard of a few who did start just like that...and since he was done with transplant, his oncologist told him they had seen a few with similar start as he had!! With hives. Anyone else with hives?

I was diagnosed in February with NHMCL and I am currently undergoing Chemo (Nordic 2 protocol). I didn't have the hives, but I had intense body itching whcih went away right after my first Chemo treatment. Since I started my chemo my platelets stay pretty low and I have to be very careful about cuts too. Normal for them to drop with Chemo, but they do come back up. Hopefully he has seen that too.

My husband was diagnosed a year ago July. A few days after his diagnosis, he went downhill dramatically. Very low blood counts and platelet count and needed a wheelchair. They started chemo right away and by Feb. he was in complete remission. His chemo was bendamustine with rituxan. Much easier to tolerate than R-Chop etc. He never had any adverse reaction. He also had very bad hives that probably started at least a year before his diagnosis and got worse and worse. At times he looked like he had alligator skin. When they got on his lips, they were hard knots and his lips would puff up drastically. He said he looked like Homer Simpson. The doctor also says hives are not a symptom but was very interested in the fact that he had them. He still gets a few small hives, maybe once a week. He takes Cetrizine and they go right away. Did you indicate that your husband had a stem cell transplant? That is our next option, we are just waiting for our ins. to okay it?

hell-o again my name is michael and imhave had mcl for 5 years aand i have alot of side effects..if you would could we email each other ..my email is arsglpmik@aol.com please i to would like to talk about mcl with prayer michael hope to hear from you real soon

I was just diagonsed w/MCL (stage IV)and had my first chemo treatment of Rituxan w/ CHOP. Only side effects so far is extreme fatigue and very low white cell count. I am going to the Lee Moffit Cancer center (tampa, fl)for further diagnoses by a Dr. Sotomayor, who specializes in MCL. How are you doing in your treatment??

I was told I have mcl in 10/09. I had one round of rituxan and have responded well. (no side effects) My Dr. wants to put me on a clinical trial of Rituxan, Cladribine and Vorinostat (Trial # OHSU-4180).

He has had patients with good results 5 + years of remission with just rituxan and cladribine and beleives the addition of the vorinostat could increase the remission rate further.

I am 48 and in good health and this is very hard to deal with, I try to stay positive but find myself on the "pitty pot" now and than.

I got a second opion from Fox Chase and they recommended the heavier duty chemo plus a stem cell transplant. I am opting for the other treatment as it is much less toxic on the body and they advise we can always go the other route if necessary.

Would like to speak, e-mail with anyone interested in dicussing this disease. My email is skibum789@aol.com Thank-You

My husband is newly diagnosed. He has no B symptoms. We meet with drs. at the Massey Cancer Ctr. at VCU in Richmond, VA this week to learn about a trial at that hospital using Bortezomib and Vorinstat.

I am 55 , good health and just diagnosed with stage 4 mantle cell lymphoma. We are trying to decide on what treatment we should take, as this was the option from the Mayo clinic. R Hyper CVAD or R-CHOP with a stem cell transplant.

I had MCL (stage 2E) and was treated with R-CHOP and a stem cell transplant. I know cancer and treatments effect each person different. I celebrated my second birthday yesterday (Sept. 4) of my stem cell transplant. And have been cancer free since 09/04/08 (Praise God). As you go through your treatment, please remember to ask lots of questions and if possible have someone with you at all appointments so they can remember what you may forget from the doctor and keep copies of a bloodwork and test results for your own record.

My father was diagnosed six weeks ago with MCL the aggressive variation & not the indolent variation. He will be 72 yrs old on Thursday. It is stage IV.(bone marrow,spleen involvement) He just finished his 2nd treatment of R-Chop & has a total of 6 rounds scheduled. It will then be followed by an autoglutos stem cell transplant if all goes well. Just looking for some current info. or support. I know that age and degree of progression are not on his side but am still keeping faith that someone in a similiar situation has had a positive result.

Hi,
My son was diagnosed in 2009 at the age of 32 yrs. He was also in stage 4.
We were seen by Sloan Kettering in NYC. They began with R-CHOP and RICE chemo and
then followed up with a stem cell transplant in Feb. 2010. It has been two years plus
and he is thankfully still in remission. The doctors at Sloan do not believe in a
wait and see situation. They started chemo within two weeks of his diagnosis.
I wish you all the best. Please keep me posted and if there are any questions I can
answer or if your partner would like to speak to my son, please let me know.

Why are they watching and waiting at stage 4? I'd be questioning that. My husband has MCL and stage 4 and had treatment started within 3 days. I'd be askingnsome questions or seek 2nd opinion. Best wishes

Diagnosed wih mcl april 1 (no fools joke) Will be starting a clinical trial on april 26 @ Wake Forest Baptist hospital and UNC Chapel Hill in North Carolina. Very aggressive Chemo followed by Stem cell transplant and finally a test of a drug used currently in another cancer treatment to prevent relapse. If you want more info I'll be happy to share. but as usual I'm too tired to go into it all now. God Bless.
For most of us the danger is not setting the goal too high and missing it but aetting the goal too low and hitting it

Hi Jgilbert, I was diagnosed on 4/24/09 with Mantle Cell and am on the other side of Hyper-CVAD followed by a Auto Stem Cell Transplant.

I'd love to hear how your doing, I haven't hard anything about the test drug to prevent relapse. Would like to hear more about it when your feeling up to sharing. I did all of mine down in Greenville, SC

Hang in there and stay as active as you can, it will help you a bunch further down the track.

Hi eblondie, let me know how your treatment went for the past year. I just finished the first of 6 treatments in this clinical trial. Treatments 1,2 & 3 are increasing levels of chemo, treatment 4 is high dose chemo with SCT treatment 5 is immunotherpy and finally treatment 6 is Maintenance or consololidation therpy with Bortezomib
The Bortezomib isthe part that is the trial. I tried to find the clinical trial number From the NCI database and I think it is NCT 00310037 The complete trial takes about 2 years. Feel free to e mail me at jgilbert1270@yahoo.com
God Bless

I was diagnosed with Mantle cell lymphoma in June of 08 after discovering a lump in my armpit. Through testing they also discovered some of the mantle cells in my bone marrow. Because I was pretty much symptom free we decided to take the Watch and Wait approach. My oncologist consulted with Lance Armstrong's oncologist and this is what he also recommended.

Through CAT scans over the next year more and more of my lymph nodes were showing signs of the cancer cells so in June of 09 I started taking Rituxen, 4weeks on, 4-off, then four more treatments. I had great results from the treatment that regular Cat Scans proved.

At the beginning of 2010 I started having alot of difficulty with constipation so we scheduled a colonoscopy--which I was due for anyway. Three weeks ago I received the result and they discovered that my lymph nodes through out my colon were swelling and a large mass was found in my rectum, also a result of the mantle cell. Of course my first thought was this was a death sentence for me and felt that we needed to do whatever needed to stop or remove the cancer. Mantle cell is a blood cancer that spreads through out the lymph system so it does not do much good to start removing every part of your body that is affected by it. In fact, my doctor feels that my spleen in also involved.

The puzzeling part to me is that we are continuing with the Rituxen. As of today I finished my second session and will have three more. My doctor feels that we had great results from in before and he would rather but me through these treatment before moving to something more drastic. I am to this day still relatively symptom free, I don't have night sweats and I'm definately not losing any weight!

I guess my reason for finally deciding to join a forum is that I would like to learn from others as to what point one should take more of an aggressive approach. Some of the forums I have been reading regarding mantle cell is that most people are being treated more aggressively even to the point of stem cell transplant. What symptoms were you having? Does anyone else have close to my degree of the disease and are you still on Rituxen? Before this latest development with my colon and rectum I was at a stage IV.

I am a Mantle Cell Lymphoma (MCL) survivor. I was originally dx with MCL on 4/15/08. Cancer was originally located in my colon. I was very constipated and had bathroom problems. After a bone marrow biopsy it show no MCL in my blood. I was stage 2E. I also had no night sweat, weight loss or lumps. My oncologisty recommended doing chemo and a SCT to give me the longest possible time of remission. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. Went into remission. I had a stem cell transplant (SCT) on 09/04/08. My new birthday. :) I was able to use my own SCTs. My blood was still clear. Did transplant in Dallas, TX at Texas Oncology at Baylor University Medical Center. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had a colonscopy in Dec. 2008. It showed a complete recover from the cancer. I am now being watch every 3 months to keep an eye on the cancer. Finding out that you have cancer is a real big blow in anyones life. Support from drs, family and many friends keep me going. A positive attitude is very important. The imporant thing is to fight. Cancer is a battle. Praying that God will put doctors and others in your life to answer your questions. Always ask questions.

Just wanted to jump in with some advice about MCL. My mother was diagnosed with Stage IV MCL in July 2007. It had spread from her intestines to her spleen, to her mouth, and who knows where else. She was 81 and was not eligible for transplant or trials.

My advice for anyone facing this disease or who has a loved one that has been diagnosed, is not to read anything on the internet that is older than a year. I've read billions of articles and the older ones are always depressing and take away hope.

However things are changing rapidly with MCL treatment. My mother had the R-CHOP upon diagnosis. She had some other different treatments - let me know if you need details, but nothing out of the ordinary. She didn't get ill from the treatments, just a little tired sometimes. She has continued living an active life, walking 5 miles a day and feeling good.

Her doc told her the cancer would come back and put her on a Rituxan maintenance schedule a year ago. She goes in every 3 months for an infusion that takes about 6 hours. She drives herself to treatment and home, and sometimes stops to shop on the way home. Her remission continues and she feels completely healthy. She has had no problems for more than 3 years and it is probably much longer because she'd had it several years when diagnosed.

She is getting treated in Seattle at the Seattle Cancer Care Alliance. I can't say enough good things about that place and the doctors and nurses there.

Hang in there everyone, get the treatments, have a positive attitude and prepare for a good remission. New treatments have come out since my mom was diagnosed. They are closing in on MCL.

I don't know too much about Mantle Cell except what I read on those sites you talked about. I just want to say it is great news to hear they have come so far with MCL. I feel they are closing in on all this terrible disease. The quicker the better for all concerned. Good Luck to your mom and to you too. John

I am currently in remission after R-chop 21 and 2 follow up Rituxan and Bendamustine treatments.
I am interested in knowing what maintenance regimens have worked for others with MCL since
I will have to make a choice as to what to do going forward. I am very interested in your mot
hers quarterly treatments especially since it has been quite successful and apparently appears to carry with it very low toxicity( something I feel very strongly about). Would you please give me a through description of her maintenance treatments with Rituxan and any thing else that may have been administered along with it. I would greatly appreciate it. Godsman

Hello - I newly diagnosed and new to the boards. I am going in for a final lymph node biopsy on 10/19 - preliminarily I have MCL. I am working with doctors at a large suburban hospital in Detroit, but have started communications with the University of Michigan Lymphona clinic. The questions I have now are: 1) has anyone had any insurance problems with any of the possible regimens and 2) If my current doctor and UofMich docs agree on the best course of treatement how much does it matter where I get treated?

Glad you found us. I do not have MCL but others here are dealing with it and they can help you there. As to your questions, I personally have not had any problems with my insurance. They have never questioned any treatment or procedure in nearly 2 years of treatment. I feel truly blessed for that. As far as where you get treated I would say if both are in complete agreement with your diagnosis,plan of treatment and follow up then it probably would not matter and would then become a matter of personal preference. The big thing is knowing which place has the most options to offer you both at the start of treatment and down the road. Some of the newer treatments are not offered everywhere. You will probably be able to get a good feel for it at your appointments. The major cancer centers are usually the best choice. Good luck. Mary

Just found out last night I have mantle cell lymphoma. Routine colonoscopy results came back with the diagnosis. Don't know what to expect, but am trying to get staging done asap. Ohio State has an NCI affilitated hospital that I am going to try and get to. Prognosis doesn't sound to good from what I can read. Any help with where and who to see would be helpful.

I am a 2 1/2 year suvivior of MCL. You said that you read about MCL. One thing you should be a where of that there are major research going on with MCL. And the survival rate is increasing with the new treatments. I had a stem cell transplant on 9/4/08. This was to reduce the reoccurance of MCL. I have been cancer free since. Check out information from the www.LLS.org/lymphomaeducation.

My dad was diagnosed with MCL today, he is 58 has always been in great health...reading all the information put me in a state of shock and depression. After reading all the bad news I decided to google "I survived MCL". If anyone can please help me with a list of questions I should ask the doctors, it would be greatly appreciated. I so nervous and scared but feel some comfort reading all the stories of victory. Thank you for the support.

diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

Hi
Just a few questions?
Where did you have your initial treatment? (MD Anderson)
Did you have a watch and wait period prior to your treatment?
Were you on a maintenance program after your first remission?

You asked for our thoughts:

As we all with MCL know there is no standard of care. So anything that sees reasonable is reasonable.

Recently Bendamustine w/Rituxin has been used as a less aggressive approach as compared to HyperCVAD, RICE or Maxi Chop.

Unfortunately the new biological more targeted treatments are 1 to 3 years off.

So I'm assuming your Dr. believes the Velcade and Rituxin will keep your disease under control until the new targeted therapies are available.
- better targeted monoclonal antibodies
- the use of compound molecules
- stopping mutated cell reproduction biologically

I havent spoken to a a soul, just keep it all in.......im now at screaming point

Ive read comment after comment treatment after treatment............

my partner and are I are alone literally. We have the diagnosis of stage 4 MCL but i cant understand why no treatment has been offered. we have an appointment on june 18th and im going to have to fly at somebodies throat........

We were asked what do you know about MCL he replied we have read and it seems there is a 3 to 5 year survival rate and the dr just nodded ........ didn't add a word.

however he is in a state..... crashed the car whilst driving.....impact being the wake- up call and a couple of incidents since where by he just falls a sleep no matter how hard the fight to try to avoid things - I wonder when the help arrives or is it simply dependent on where you live......Where do you turn ....where do you go

I apologise for being negative but busting it to turn it in to a positive

I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

My husband had a swollen lymph node on his face last year. Went to a head and neck doctor at Cleveland Clinic. It was removed. Then few months later started to come back. At that time we decided to go to osu. He went threw one course of chemo. Had bad reactions.Also this was Dec of 2011. But did get better from the chemo. Just went up to osu last Wednesday and they decided to wait and see how things went. After chemo he did get more lymph nodes swollen.Started with one now has nine.

Friday he did start coming down with hives,which has not had before with mcl.If not better will call the oncologist tomorrow.My question was who is the best oncologist at OSU?
Hope your husband is doing better. Will pray for both of you.

My husband had a swollen lymph node on his face last year. Went to a head and neck doctor at Cleveland Clinic. It was removed. Then few months later started to come back. At that time we decided to go to osu. He went threw one course of chemo. Had bad reactions.Also this was Dec of 2011. But did get better from the chemo. Just went up to osu last Wednesday and they decided to wait and see how things went. After chemo he did get more lymph nodes swollen.Started with one now has nine.

Friday he did start coming down with hives,which has not had before with mcl.If not better will call the oncologist tomorrow.My question was who is the best oncologist at OSU?
Hope your husband is doing better. Will pray for both of you.

My husband had a swollen lymph node on his face last year. Went to a head and neck doctor at Cleveland Clinic. It was removed. Then few months later started to come back. At that time we decided to go to osu. He went threw one course of chemo. Had bad reactions.Also this was Dec of 2011. But did get better from the chemo. Just went up to osu last Wednesday and they decided to wait and see how things went. After chemo he did get more lymph nodes swollen.Started with one now has nine.

Friday he did start coming down with hives,which has not had before with mcl.If not better will call the oncologist tomorrow.My question was who is the best oncologist at OSU?
Hope your husband is doing better. Will pray for both of you.

I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

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